7 Years Alive! Plus: I’m Afraid To Get Into My Bed, Which Is Where I Traditionally Sleep
Monday December 15th 2014, 4:29 pm
Filed under: Family, Friends, Health (Not Cancer), Leukemia, Me, Myself, and Reid

This is not at all how I intended to start this post, but check this out. I took a glance at the “At a Glance” section of all the numbers on my blog and noticed some kind of magical mathematical blog achievement (blogchievement) wherein the number of posts I’ve written and posted is almost exactly equal to the number of comments that have been made by the likes of you, if you use some very complicated and impressive math that I figured out how to do all by myself:

Posts *100=Comments

Very Complicated And Impressive Equation: Posts*100=Comments

Look, I realize that it’s a little off. The thing is that the number of comments would be exactly 100 times more than the number of my blog posts, but I didn’t notice this magical maths until after I responded to someone else’s comment with my own comment. Since that last comment was by me, it doesn’t really count. I’m fairly certain this is how Stephen Hawking justifies his complex calculations. “Sure, I filled up eight chalk boards, but something’s just not working… I’ll erase this part about E equaling MC². Eureka! I’ve done it again!” is what he probably exclaims to himself as he coughs on all that chalkdust.

Like I said, this is not all how I intended to start off this blog entry, but I noticed it and I was obviously caught up with it. That rarely happens with me and any sort of math.

However, that being said, I just celebrated Alive Day on December 6, which will lead to more math in just a minute. Stick with me while I remind and explain Alive Day. For those of you that don’t remember or never read any previous posts from this time of year, Alive Day is the anniversary of my diagnosis with leukemia. It may seem strange to celebrate the day I was diagnosed with cancer, but had I not been diagnosed that day, I may very well have died. I’d spent months visiting various doctors, trying to find out what was wrong with me. During all this time, the bad stuff that leukemia does to the blood in the body was done to a very advanced degree. So I was very lucky that I left New York, came to Denver, and was almost immediately diagnosed so that I could be treated.

There’s math associated with this particular Alive Day (I don’t lie) which is that I was on chemotherapy for exactly three-and-a-half years, which is the normal amount of time that a man has to be on chemo for leukemia (women do two-and-a-half years, because they don’t have all the dangly bits that men have in which leukemia likes to hide).(I should clarify: leukemia likes to hide in cerebrospinal fluid that surrounds the brain and spine, and women absolutely have CSF, brains, and spines that are just as good as men’s, but they don’t have testicles, in which leukemia also likes to hide in men).(See. spines are sort of dangly and so I didn’t want there to be any confusion.) (Phew, this is too much parenthetical notation, I gotta get out of here…)

SO, three-and-half years of chemo. For me, that meant a lot side adventures, including cranial radiation, hemorrhagic pancreatitis, two not-hemorrhagic bouts with pancreatitis, a psychotic break where I thought I was asleep for two-and-a-half days and everyone else thought my brain had up and broke, a ten day period of delirium that I can’t remember, because delirium is state in which one can’t form short-term memories, getting a big ulcerated radiation burn on my back that went all the way to my spine that didn’t get fixed for several years, paralyzed body parts, and being traked (not a word, but should be shorthand for getting a tracheostomy). It was all kinds of fun. If you weren’t around, you really missed out.

The math (finally, the math) is that, as of Alive Day 7, I’ve been recovering from chemotherapy for the same exact amount of time that I was on chemotherapy. Three-and-a-half years. On Alive Day, I was in a celebratory mood about being alive for seven years against a tremendous number of odds. I saw a movie with my dad and had lunch with my folks and my friend Matt. Math came up again on December 7, when I realized that every day I was recovering was now a day longer than I’d been on chemo and radiation. That sort of bummed me out. I mean, knowing that Alive Day 7 was coming bummed me out from time-to-time, especially over the summer. I never, ever, in my wildest dreams thought it’d take me longer to recover from chemotherapy than to finish a long course of chemotherapy.

In fact, the night I was diagnosed (December 6, 2007), I was told I’d probably spend 30 days receiving chemo in Denver and then I could probably return to New York, where I could receive chemo treatments while going about a slightly more chemoey version of what had been my semi-normal life. But then I got hemorrhagic pancreatitis, and New York was pretty much off the table. Another bummer. But, when I was told when the end-date for my treatment would be (May 11, 2010), I was naïvely confident that I would simply return to New York the following summer. Another reality check, another bummer.

I had to wean off medications, I had to lie in a hyperbaric oxygen chamber for a month so there would be enough blood flowing to my ulcerated radiation burn to get out all of the necrotic and radiated tissue so that a plastic surgeon could close up the hole in my back, I had to undergo tests to identify and work to get rid of my radiculopathies, diabetes from the anti-psychotic medication I take to keep my tactile hallucinations under control (read this),I had to wean off medications.

Wait, did I already mention having to wean off medications? Yes. It’s because the system is broken and it makes me mad. It turns out that when a doctor puts a patient on tons of medications, there’s not really anyone or anywhere to help get off those medications unless the medications are being abused. For people like me that followed all of my doctors’ orders but had become physically dependent on some of my meds (which is different from addiction because I wasn’t abusing those medications, I was following strict orders), after chemo, I was left adrift still on dozens of medications. I got off of most of them just with the help of my mom. But certain meds, especially methadone (read this) of which I’m still working to get off the successive pills for the successive pills that aren’t methadone (I’m sooooo close) require professional help.

A large part of them problem with recovering, I know now, is that I suffered brain and nervous system damage during chemo. I have a brain injury and my nervous system is in a state of disarray. I can say those things now because they’re true and I’ve accepted them. My nervous system, at least, is slowly repairing itself. The same can’t be said for my brain. In fact, it’s hard to say much about my brain. We know that repeatedly injecting toxic chemotherapy drugs into my CSF covered an entire hemisphere of my brain with a chemical burn. But we also suspect that the electrical signals that control certain brain functions are not firing right. And the reality check there is that science can’t fix that in 2014. Those electrical impulses are not even something we really understand. Which is kind of humbling and amazing at the same time.

As a result of my brain damage, I’ve suffered for a year-and-a-half now from tactile hallucinations. I saw myriad neurologists about the hallucinations, most all of whom said the hallucinations must be a psychiatric problem. I visited the Mayo Clinic in Minnesota (in February–not ideal) and they were completely unable to help me with my hallucinations. They’re so realistic that if I hadn’t been going through this for so long, I’d swear real people were touching me, torturing me, and molesting me. But I know now it’s a result of my brain damage. It took two years after chemo for them to start and while I’ve had some good nights where they don’t appear, I’ve had to live with them almost every night since last July.

Like I said up above, I’m extremely close to being off the narcotic that was used to replace another narcotic that was used to replace methadone in June. This weird tradeoff of narcotics is not how someone who hasn’t abused medications prescribed by a doctor normally gets off of whatever they were prescribed. It’s how heroin addicts are weaned off of heroin. I’ve worked with two separate drug addiction specialists since May and neither ever seemed to understand that I wasn’t abusing methadone–I just needed help getting off of it. I wanted off of it. And I was never on it because I took heroin. I was put on it for pain during my six month hospital stay in 2008 and I successfully weaned myself off of almost all of it during chemo. I just needed help and I never found a person that would have been more appropriate to help me.

Part of going off a narcotic is that the lower the amount being taken, the more the brain wants to hang on to the drug. Withdrawal for titrating down from large amounts is easy, but–at least to me–it’s oddly inverted for the smallest titrations. As of about two weeks ago, I’ve been taking one quarter of a pill every three days. Before that, I had been taking one quarter of a pill two days in a row, with one day off in between. This has definitely been the hardest part of the wean so far. I’ve been experiencing visual and audio hallucinations, sweats, chills, not knowing where I am, terrible headaches, intense dizzy spells, and a fierce comeback of my worst tactile hallucinations. It’s especially weird, but true, that I only experience hallucinations when I’m lying down in bed. So, naturally, I’ve been afraid to go to bed.

Between avoiding bed and laying in bed and feeling like I’m being haunted by demons all night, with an array of visual, audio, and tactile hallucinations, plus not knowing where I am, I’m not getting the sleep I need. That creates a huge problem. It makes it so I can’t do anything I want to do. Sleep deprivation keeps me from my friends, it keeps me from parties, it keeps me from cleaning my room, it keeps me from playing music, and it keeps me from writing. I started writing this on December 7, and it’s now December 15. I’m thrilled that I found the energy to finish it, but I’m again bummed that I couldn’t put this out on Alive Day and that I haven’t been able to write more blog entries. There’s a lot more I want to write about. Some of them are things I’ve wanted to write about for years. For some of those, I have drafts, and others, just ideas.

I’m mad and I’m bummed. Not with any one doctor or practice, but with our medical system. It just isn’t equipped to treat someone list me. And while I haven’t found anyone else experiencing tactile hallucinations (part of me expects I never will), there are tons of people just like me that are orphans of the medical system (a term coined by my psychiatrist). Not only do the medical resources to treat us simply not fully exist, but very few doctors have the courage to take on cases that they so completely don’t understand and say, “I don’t know how we’re going to treat you, but we’re going to try everything we can.”

In a way, it’s a result of living in 2014. One day, I’m sure all of my conditions will be understood and treatable. But they’re not right now and I’ve had too many doctors send me away because they’re scared of the unknown. The medical field moves fast, but medical mysteries move faster. I am certain that between me and my most trusted doctors, we will juryrig a way to make me better, to get rid of my tactile hallucinations once and for all. I’m also certain that one day, that won’t be necessary–science, the medical field, and especially the way doctors treat patients will be able to take on brain damage and nervous system damage like mine. I can’t wait.


P.S. (Update): I read through this post and realized I never mentioned that my radiation was cranial in nature, meaning it was shot directly into my brain. I guess brain damage can make me forget about how I got my brain damage. Oh well.

12 Comments so far
Leave a comment

Just reading your story scares, amazes and astounds me. Keep recovering and keep writing,
You give me faith.

Comment by Karen 12.15.14 @ 4:50 pm

and through it all, you have been brave and kind. The disappointment, discouragement and fear have never changed the truly remarkable man you are. I am honored and awed to have traveled this very difficult road with you.

Comment by Mom 12.15.14 @ 6:48 pm

You are and shall always be my hero!

Comment by Scott Levin 12.15.14 @ 6:59 pm

You’re post are amazing. You’re alive and that is priceless. You’re in my prayers.

Comment by Lisa Shore 12.15.14 @ 8:37 pm

Thanks so much for sharing this.

Comment by Dave 12.15.14 @ 8:38 pm

As always, Reid, your remarkable courage, intelligence and kindness have amazed me through these past 7 years. I love you forever and always. You will succeed and conquer!

Comment by Cindy 12.15.14 @ 9:15 pm

What a compelling essay! Reid- you open doors of understanding for all if us. I can’t begin to comprehend the strength, frustration and hope you live with on a daily basis. As we enter in the festival of Hanukah, may you find light in the midst of the darkness that you defy every time you refuse to succumb to despair. Thank you for being our teacher. Joe.

Comment by Rabbi Joe Black 12.15.14 @ 9:19 pm

Thank you for all your wonderful words of support and discovery.

I have Post Script comment that I realized I should add after I read through this post. I never mentioned that my radiation was cranial in nature, meaning it was shot directly into my brain. I guess brain damage can make me forget about how I got brain damage. Oh well.

Comment by Reid 12.16.14 @ 8:37 am

You’ve touched on an issue I know I will be facing – getting off all the meds that I’m on. Already the docs and nurses just push the conversation into the future, they are all focused on my palliative care. And a few friends don’t appreciate the difference between ‘physically dependent’ and ‘addicted’. And it somehow hurts so much when I am told I’m addicted while I need to be taking the drug.
I’ve wanted to write about my experiences and have done a poor job, mostly because in the thick of it my drug addled chemo brain won’t focus. I am in a state currently where I can focus, and your posts are strong encouragement to do so. I appreciate your straightforward style, no poor me crap. I’d say stay strong, but it is clear you will. Ever forward.

Comment by Steve Slavsky 12.16.14 @ 9:30 am

Though you’ve not been able to make the art you were born to make (yet), know that this blog in its own right is art. Lots of it. Lots of honest words, expression, maybe the beginnings of ..??? HATE that you’ve gone through this in your life. HOPE recovery keeps happening and happening and happening…

Comment by Jessie 12.16.14 @ 7:58 pm

Reid: your writing is brilliant. So, your brain must be recovering and/or you were Stephen Hawking like b4! Refuah Shlema!

Comment by Bill Silvers 12.16.14 @ 9:52 pm

You are an inspiration to all of us. Your trials have made you a very strong person with knowledge to fight the unknown. You give us strength to fight! Keep moving in the direction you are and writing your blog. You teach everyone around you something new every day!

Comment by Debbie Morrison 12.16.14 @ 10:12 pm

Leave a comment
Line and paragraph breaks automatic, e-mail address never displayed, HTML allowed: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>